autonomy

At this time of year it somehow seems extra tragic when bad things happen to good people. Aside from the global crises afflicting our world and unravelling before our eyes in our living rooms, I personally have a number of friends currently facing serious illness, impending death, sudden bereavement, and yet it must seem like everyone around them is caught up in trivia and pleasure, festivities and excess – in reality of course, who knows how many others are only hiding stresses and problems from public consumption?

It’s in this spirit that my mind has been wandering over the huge dilemmas facing different families; what would I choose in their circumstances? how would I cope?

Metropolitan police officer Heidi Loughlin, 33, discovered she had an aggressive form of breast cancer the day after finding out she was pregnant with her third child. She decided not to have a termination of the pregnancy but to delay treatment until after the birth. Her condition became so serious however that her baby girl was delivered by Caesarean Section on Friday, 12 weeks early, and Heidi has been given a short time to recover from the operation before starting powerful chemotherapy next week. She faces a pretty gruelling Christmas, but is determinedly looking forward to March when she will get her baby girl home to her two brothers. She has risked her life to give her daughter a chance and says she has no regrets; it was all worth it. What would I have chosen in this situation, I wonder? What would you?

Then there’s fireman Patrick Hardison. He entered a burning house in Mississippi; the roof collapsed on him leaving him with severely disfiguring burns across his face, head, neck and upper torso. Think for a moment of the pain of a small burn from an oven shelf, a hot iron … Multiply that by ten trillion. Even after 70 operations he was still so terribly mutilated (see pictures here if you can cope with them) that he would only go out heavily disguised. What kind of Christmases has he endured, I wonder? He recently underwent the most extensive face transplant ever performed. Factor in not only the excruciating pain at every stage but the risks … would I have been courageous enough to want to go on living? Would you?

Within the last two months, two transgender women have been found dead in their cells in all-male prisons: 21 year old Vikki Thompson in November, and 38 year old Joanne Latham in December. No more Christmases for them. Many difficult questions present themselves where transgender people are concerned and there is generally much greater sensitivity to their issues, but what about when they commit crimes, serious offences that land them in prison? Not only their own welfare is at stake but that of their fellow prisoners. Where would you have housed these two? Nearly 150,000 people signed a petition to house a third person, 26 year old Tara Hudson, in a female institution even though she had been convicted of assault. Would you have signed it?

A 50 year old woman, mother of three, is so determined not to grow old and ‘lose her sparkle’ that she has refused to undergo kidney dialysis. Her kidneys were seriously damaged when she took an overdose following a diagnosis of breast cancer. For years her life style has been chaotic to say the least, and one wonders, what is Christmas like in that household? Whatever, the Hospital Trust responsible for her care appealed to the courts to have treatment imposed against her wishes. But a senior judge has upheld her right to an autonomous choice to die. Was he right to do so, do you think?

I’m merely scratching the surface by way of illustration. Remember all the cases we’ve heard about recently – various scandals around abortions carried out on the grounds of gender alone; teenagers killing themselves because they’re obsessed with losing weight; all the dire warnings about how to deal with declining fertility; the consequences of a simple blood test at 18 weeks pregnancy that allows screening for thousands of genetic conditions … the list goes on and on. My files are bulging with clippings and articles.

So at this time of celebration and joy, let’s spare a thought for families caught up in tragic circumstances, and the courageous souls who try to support and guide them. May they find wisdom, courage and strength. And I wish all visitors to this blog peace as you prepare for the festive season whatever it means to you.

Tony Nicklinson is 58. He’s paralysed from the neck down, can’t speak, and his only means of communication is by moving his eyes on a screen linked to a special computer. And yet his brain is so alive and intelligent that he can hold his own in arguments with twitters and QCs alike.

Prior to the stroke, Mr Nicklinson was a handsome, successful, fun-loving man, keen on extreme sports. He was in Greece on a business trip, when he suffered a catastrophic stroke in 2005. Now he is in a locked-in state, dependent on carers for his every need, with no hope of recovery. He considers his life as ‘miserable, demeaning and undignified‘. He ‘has no privacy or dignity left‘, and he rates it a state worse than death. He’s held that view since 2007; it’s no passing whim. It’s what’s described as a ‘voluntary, clear, settled and informed wish’ in legal parlance. Watching him on The Channel 4 documentary, Let Our Dad Die, surely no one could help but sympathise with his viewpoint. Even the Greek doctor who saved his life is appalled by the consequences of his actions, although no blame attaches to him.

In March Mr Nicklinson won the right to have his case heard by the High Court. The hearing took place last week (starting 19 June). There was considerable media interest in the run up to it. Lord Falconer visited the family at home. BBC’s Fergus Walsh went to see for himself what kind of a life a locked-in patient has. Channel 4 aired its documentary. Though he could communicate with these people in his own home, Mr Nicklinson was unable to attend the hearing in person, so he stated his arguments through emails and lawyers.

His case? Simply put, he is incapable of taking his own life, so he wants the judges to rule that, when he decides he wants to die, a doctor will be immune from prosecution if he/she helps him. Mr Nicklinson fully realises that the law as it stands prohibits anyone else taking his life; that would be murder. His defence rests on the view that he is being discriminated against, because of his disability. He is looking for assistance to do what he would do for himself were he able. Furthermore he adds poignantly, why should other people be allowed to condemn him to a life of increasing misery?

His barrister described it in more ponderous legal terms: ‘a serious interference of his common law and Convention rights of autonomy and dignity’.

It’s important to note that Mr Nicklinson is not seeking a change in the law. He is seeking two declarations from the court.

1. That in the circumstances of his case – and where an order has been sought from the court in advance – ‘the common law defence of necessity would be available to a doctor who, acting out of his professional and human duty, assisted him to die‘.

2. That the current law of assisted suicide and euthanasia is incompatible with his Article 8 rights of autonomy and dignity .

The QC acting for this family argues that a prior sanction by a court ‘would provide the strongest possible safeguard against abuse’. And furthermore ‘it would also provide a safeguard against the concern, often expressed by disabled opponents of legalisation, that a change in the law would lead to a change in people’s attitudes to disabled people, who they predict would come under subtle pressure to seek an assisted death through fear of being a “burden”.’

But any loosening of the limits frightens the legal fraternity. Speaking directly to Mr Nicklinson, Lord Falconer made it perfectly clear that in his judgement, modifying the law to accommodate such an act would be ‘crossing the Rubicon’. He was himself sympathetic to assisted suicide in cases of terrible disability with no prospect of improvement, where the patient expressed a sustained wish to put an end to their misery, but ending someone else’s life is murder and that must always be unacceptable.

Pause here for a moment and ask yourself: What answer would I give to Tony Nicklinson?

‘… the law isn’t about how we feel. The law isn’t about how you feel if you were once healthy and fit and happy, and now aren’t. The law, as Lord Falconer said on that Dispatches, is the same for everybody. “If people want to kill themselves,” he said, it’s an “entirely private matter”, but “they can’t kill somebody else”. The law, as the disability rights campaigner Kevin Fitzpatrick also said on the programme, is meant to offer protection. “When you develop a society where some people judge that other people’s lives are not worth living,” he said, “that’s the Rubicon.”‘

There can be no happy ending for the Nicklinsons, neither Tony, nor his wife, nor his daughters. But each time a tragic case like this comes to court, and I watch the family being forced to parade their lives in front of others, to expend dwindling energy on fighting their cause, I feel there has to be an alternative.

I can, of course, see the dangers inherent in a change to the law against taking life. The consequences could be inconceivably horrible. I accept too that these extreme cases make bad laws. But the fact remains, that these exceptional circumstances do present from time to time. And they seem to cry out for special judgements.

Would it be so terrible to openly acknowledge this fact, and to relieve these families of the necessity of taking their cases to the courts? Why not constitute a sort of Ombudscommittee – a gathering of carefully selected, experienced and wise folk, representing law, medicine, religion, ethics, patients – who could quietly, rationally, compassionately, debate the very few cases which fall into this terrible legal limbo, taking guidance from others as and when they need it? Not in such a way as to drive the debate underground, not to sweep the anomalies under the carpet, but to take individual cases away from the heat and distortion of media coverage, protecting and supporting those for whom this dilemma is a lived reality not a theoretical argument.

I haven’t ever seen this idea promoted, and it’s the first time I’ve aired my own view on this. So what do you think? Would you be in favour? Or can you see some glaring reason why this would not be an acceptable way forward?

You’d have to be an ostrich on an uninhabited desert island not to be aware that this week marked the Diamond Jubilee of the Queen’s accession to the throne. Whatever you think of the institution of monarchy, I’m sure you would agree she is a truly remarkable woman. Well into her eighties she shows a stamina and strength of character and purpose few of her age group could or would attempt to emulate. Her timetables are punishing. Her application to the duties and responsibilities of her position, unflagging. She seems to make few concessions to the years. No other 86 year old of my acquaintance would stand for hours on a barge on a cold wet day and stay up all hours listening to deafening music and smile and chat relentlessly to perfect strangers hour after hour and … well, you get my drift.

But she is human. She is elderly. A jolt went through the nation recently when her husband, Prince Philip, aged 90, showed his frailty, actually missing royal Christmas festivities because he required cardiac surgery. Serious stuff. And now this week he’s in hospital missing the Diamond Jubilee celebrations because of a bladder infection. Not of itself serious, but obviously someone somewhere has concerns.

It made me think … What if he or the Queen suffered a sudden medical emergency necessitating resuscitation? What would be the morally right course of action? What would they themselves choose? Would their preferences prevail?

This week we’ve learned that an alarming number of elderly people are being resuscitated against their wishes. Hey, never mind the royals, I have a vested interest in this. A few years ago I wrote my own advanced directive spelling out the circumstances in which I wish to be allowed to die with dignity. No dragging me back for a life of pain and suffering and degradation, thank you very much. I had the said declaration medically witnessed. I filed it carefully and clearly. I had deep and meaningful discussion with my nearest and dearest, so that they are fully informed of my intentions and preferences, and committed to ensuring they are respected.

Imagine if some enthusiastic (or maybe insecure) junior doctor somewhere decided he would overrule all that careful thinking and discussion and do his own thing. Boy, would I be mad! What gives him the right to know better than I what is best for me?

So the National Confidential Enquiry into Patient Outcome and Death Review, looking into the care given to 585 acutely-ill patients (average age 77 years) who ended up having a cardiac arrest, made sobering reading this week. The watchdog concluded that ‘cardiopulmonary resuscitation (CPR) had wrongly become the default setting.‘ They recommended that sensible assessment as to the necessity for resuscitation should become standard. Well, hurrah. Sensible indeed.

In the wake of these revelations, naturally lots of people have stories to tell of misapplied zeal, or woeful lack of monitoring or commonsense. And of course, their accounts also remind us that experience and preferences vary greatly.

My own father had a heart attack very publicly on a bus when aged 75, on his way to visit a beautiful garden. Only minutes into the journey he observed that it was going to be a lovely day and then slumped against my mother, dead, without fuss or drama. For him, perfect. But my mother had to stand on one side while he was pummelled vigorously. In vain. The paramedics had no choice but to attempt to revive him, they said.

In her case, as soon as she went into residential care, we made it absolutely clear to all relevant parties that she did not want heroic efforts to resuscitate her, with appropriate signed-and-sealed documentation in place. The day she put her name to her advanced declaration in the presence of two independent witnesses, the family were going to a funeral and the room was full of black-clad sombre people, which gave it all an unintended but rather theatrical ambience! When her last illness took hold, she was past acting autonomously, but we were able to reinforce that considered and sustained choice with the caring team. She died with peace and dignity aged 90, unmolested.I devoutly hope that this latest public report will spark sensible discussion and lead to more sensitive and appropriate practice. We only die once.